Guilfoyle S M, Denson L A, Baldassano R N, Hommel K A
Center for the Promotion of Treatment Adherence and Self-Management, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH 45229, USA.
Child Care Health Dev. 2012 Mar;38(2):273-9. doi: 10.1111/j.1365-2214.2010.01200.x. Epub 2011 Feb 7.
The psychosocial functioning of caregivers of adolescents managing inflammatory bowel disease (IBD) has been understudied; yet, poor caregiver functioning can place youth at risk for compromised disease management. The current study addressed this limitation by examining a sample of caregivers of adolescents with IBD. Study aims included (1) documenting rates of paediatric parenting stress; (2) identifying associated sociodemographic predictors of parenting stress; and (3) comparing previously published rates of parenting stress to those within other paediatric chronic conditions, including cancer, type 1 diabetes, obesity, sickle cell disease, bladder exstrophy.
Caregivers of adolescents with an IBD diagnosis (M(age) = 15.4 ± 1.4, 44.4% female, 88.7% Caucasian) and receiving tertiary care within a gastroenterology clinic (n = 62) completed the Pediatric Inventory for Parents (PIP) as a measure of paediatric parenting stress with frequency and difficulty as PIP subscales. Paediatric gastroenterologists provided disease severity assessments.
Adolescents with IBD were experiencing relatively mild disease activity. Bivariate correlations revealed that PIP-difficulty was positively associated with Crohn's disease severity (r = 0.38, P < 0.01). Caregiver age was negatively associated with the frequency of parenting stress total (r = -0.25, P = 0.05) and communication scores (r = -0.25, P < 0.05). The frequency and difficulty of parenting stressors within the IBD sample were similar to rates within type 1 diabetes, but were significantly lower than rates identified in other paediatric chronic conditions.
Caregivers of adolescents with IBD seem to experience low rates of parenting stress when their adolescents are receiving outpatient care and during phases of IBD relative inactivity. The sociodemographic characteristics of IBD families (i.e. primarily Caucasian, well-educated and higher socio-economic status) likely encourage greater access to financial and psychosocial resources, which may aid in promoting more optimal stress management.
青少年炎症性肠病（IBD）照料者的心理社会功能研究不足；然而，照料者功能不佳会使青少年面临疾病管理受损的风险。本研究通过对一组青少年IBD照料者进行调查，解决了这一局限性。研究目的包括：（1）记录儿科养育压力发生率；（2）确定养育压力的相关社会人口学预测因素；（3）将先前发表的养育压力发生率与其他儿科慢性病（包括癌症、1型糖尿病、肥胖症、镰状细胞病、膀胱外翻）的发生率进行比较。
IBD诊断青少年（年龄中位数=15.4±1.4，44.4%为女性，88.7%为白种人）且在胃肠病诊所接受三级护理的照料者（n=62）完成了《父母儿科量表》（PIP），作为儿科养育压力的一种测量工具，频率和困难程度作为PIP子量表。儿科胃肠病学家提供疾病严重程度评估。
患有IBD的青少年疾病活动相对较轻。双变量相关性分析显示，PIP困难程度与克罗恩病严重程度呈正相关（r=0.38，P<0.01）。照料者年龄与养育压力总分频率（r=-0.25，P=0.05）和沟通得分（r=-0.25，P<0.05）呈负相关。IBD样本中养育压力源的频率和困难程度与1型糖尿病的发生率相似，但显著低于其他儿科慢性病的发生率。
患有IBD的青少年照料者在其青少年接受门诊护理以及IBD相对不活跃阶段，似乎经历的养育压力发生率较低。IBD家庭的社会人口学特征（即主要为白种人、受过良好教育且社会经济地位较高）可能促使他们更容易获得经济和心理社会资源，这可能有助于促进更优化的压力管理。
